S2E11: Disability

It affects 1 billion people worldwide, so why is disability considered a niche issue? How can we make life easier for people with disabilities? And what does any of this have to do with As Seen on TV products?

Featuring Emily Ladau, disability rights activist and author of the new book, “Demystifying Disability: What to Know, What to Say, and How to Be an Ally.” Pick it up here.

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Taboo Science is written and produced by Ashley Hamer. Theme music by Danny Lopatka of DLC Music.


TRANSCRIPT

Ashley Hamer: I used to think that I didn't know anybody with a disability. Like, okay, sure. I have a relative with autism, but that's not a disability. That's just autism. It's its own thing. Right? 

And yeah. As I mentioned in the hormone episode, my brother has diabetes. But it's not like he can't get through life that way.

And I remember a kid in my class who wore a back brace that had to be tightened every day after lunch. I think it was because he had scoliosis. But I wore an arm brace once after a wrist injury and that's not a disability. So did he have a disability?

And then there are the many people I've known with mental health disorders. Depression and schizophrenia are two big ones in my circle. But you wouldn't be able to tell they had these conditions by looking at them. So did they have disabilities? 

I hope you realize by now that the answer to all of these questions is yes. So why didn't I think of them as disabilities? The answer, most likely, is that disability is an uncomfortable word. It's taboo. It's considered to be a negative, kind of tragic thing, which is why so many people either don't identify it at all or use euphemisms like "physically challenged" or "special needs" or "differently abled." To be fair, those terms, aren't always wrong. I mean, some disabled people do identify that way. But they pose a problem when they're used as a way to avoid discomfort. 

Disability is way more common than you probably think. And it's worth normalizing, both the word itself and, you know, the concept as a whole. And that's not just for the sake of people with disabilities. It's for the sake of the people who will have disabilities, potentially people like you and me. 

Yeah. Some disabled people say that non-disabled people are just temporarily able-bodied and that the disability community is the only community that anybody can join at any time. And it's true. 

Today, we're diving into the history, politics, and everyday reality of disability. And we're going to find out why you should care about disability rights, even if you're not disabled yourself. 

I'm Ashley Hamer. And this is Taboo Science, the podcast that answers the questions you're not allowed to ask.

The idea that a non-disabled person could become disabled at any time might seem alarming or even threatening, but it doesn't have to be.

Emily Ladau: it's not meant to be scary. It's just a reality of the fact that your body and your mind are not static and neither is the world around you. Things can change. 

I'm Emily Ladau. I am a disability rights activist, a writer, a storyteller, and a communications consultant. I like to joke that I'm a professional disabled person. So I pretty much just do disability 24/7 and I am disabled 24/7.

Ashley Hamer: Emily has a new, fantastic book out entitled "Demystifying Disability: What to Know, What to Say, and How to Be an Ally." 

Emily Ladau: I have definitely had to practice saying that title a few times to get it out all in one go. But it's basically a primer about disability issues and that's what I'm passionate about. I'm passionate about educating people about disability.

Ashley Hamer: And just to get to know you, what is your disability? 

Emily Ladau: I have a physical disability called Larsen's syndrome. It's a genetic joint and muscle disorder and my mother has it and her younger brother and my uncle also has it and I am a wheelchair user. 

Ashley Hamer: There are a lot of different types of disability. Someone could be born with a disability, like Emily was, or acquire it later in life, like through a disease or an accident. The disability could be physical, mental, cognitive, or developmental. It could be a hearing or vision disability, a communication disability, or even a chronic illness. It could be visible or invisible. 

The general definition of a disability is some condition that impairs or limits a person's ability to engage in certain tasks or typical daily activities. But that definition is hyper-focused on what a person can't do. Emily has a wider definition. 

Emily Ladau: The way that I define disability is as a natural part of the human experience. And I recognize that that's not a textbook definition. It's not a medical definition. It's not a diagnosis, but to me, it's an identity. It's a part of who people are. Yes, it involves medical-related issues. Yes, it can involve impairment, but it's also simply a part of how we exist. And so I really wanted to give people that understanding that 1 billion people around the world have some type of disability. This is really not a niche issue at all. And we tend to think of it as one, but when it comes down to it, one in four adults in the US have some type of disability. And when we think about that statistic, it's absolutely possible that either you or someone you know is disabled. I mean, just statistically speaking.

Ashley Hamer: And of course there's nothing new about disability. Humans have had disabilities since humans have been around. 

Like, the first written record of a prosthesis is from 3,500 BC in India. The wife of a king lost her leg in battle, and the gods replaced it with a metal leg. 

The first recorded reference to an intellectual disability was in the Therapeutic Papyrus of Thebes, also known as the Ebers Papyrus, around 1550 BC. The fact that the ancient Egyptians included this disability in a document dealing with physical illnesses and injuries shows that they considered mental disabilities to be a medical problem, rather than a curse or possession like other cultures did.

Then we get to ancient Greece. Greek philosophers made a lot of advancements in math and science, so you might think that their views of disability would be more enlightened than most. You would be wrong. 

Emily Ladau: In ancient Sparta, if you were born with some kind of disability or defect, as they would call it, you would essentially be left to die because you were worthless because you couldn't fight.

You know, you were just a drain on their society.

Ashley Hamer: It wasn't just Sparta either. Aristotle himself was in full favor of laws against raising quote-unquote deformed children. Yikes. 

When Christianity came on the scene, disabilities went from a general mark of inferiority to a sign of God's punishment. And considering that disease and malnutrition, which are leading causes of disability even today, were super common back then, there was plenty of punishment to go around.

And some of the most religious were the most vicious toward people with disabilities. Martin Luther said people with intellectual disabilities were quote, "filled with Satan" and John Calvin believed that disabilities were a sign that a person wasn't chosen by God to go to heaven. Even when the Roman Catholic church provided refuge to people with disabilities, the conditions in the institutions were usually pretty horrendous. 

Fast forward to the 1800s and things aren't a whole lot better. 

Emily Ladau: If we think about things like the circus, where did that come from? Freak shows. It came from freak shows, where we put people who looked different, quote-unquote, on display, and then people would get wealthy off of making money by allowing the public to gawk at people.

Ashley Hamer: For some participants in these freak shows, the circus was the only way to make an income, which might explain why the introduction of welfare programs coincided with the freak show's downfall. 

And then there was the Holocaust. People with disabilities were the first victims of the Holocaust. By the end of world war II, 200,000 people with disabilities had been murdered and 400,000 had been sterilized. 

But there's also a powerfully uplifting thread in the history of disability. Some of history's greatest figures were disabled, from Harriet Tubman, to Frida Kahlo, to Franklin Delano Roosevelt, to Stephen Hawking. And the progress we've made in accessibility and disability rights has some incredible activists to thank for it. 

Like, it wasn't until reading Emily's book that I learned about the Capitol Crawl. That was the day in March of 1990. When more than 1000 people demonstrated at the US Capitol Building to demand that Congress passed the Americans with Disabilities Act or the ADA.

Around 60 people got out of wheelchairs and cast aside other mobility aids to crawl up the Capitol steps. The ADA was finally signed into law several months later.

Emily Ladau: The Capitol Crawl, which is this pivotal moment for the disability community and for disability rights as a whole.

That's not in textbooks. None. None of this is in textbooks. We don't know that there are prominent historical figures who were disabled. We don't know about the ways that disability advocates played a role in other civil rights movements. We don't know about the fact that civil rights leaders and other movements played a role in the disability rights movement.

We just don't think about disability history as a strand of history that we should be learning about. But the goal of my overview of history is to talk, really about US history in the 20th century as it relates to disability and just sort of trace how each decade there was something going on, something evolving all the way from, unfortunately, the mindset of Eugenics, which was essentially saying that disabled people did not deserve to live and they should not procreate, all the way to the passage of the Americans with Disabilities Act, all the way to what's going on present-day with COVID. Disability history is always in the making. We just don't talk about it.

Ashley Hamer: For example, activists are currently fighting to remove an exemption in the Fair Labor Standards Act. That's the one that ensures a federal minimum wage. This exemption, which dates back to the New Deal, allows employers to pay people with disabilities less than minimum wage. Like, way less.

Emily Ladau: Sometimes pennies per hour for doing the same work that someone without a disability would be paid, we would hope, at least minimum wage for. And not only that, but they're often doing this work in places that are called sheltered workshops, which means that they are segregated and isolated from non-disabled people.

And they're working in places where they're only other disabled people working and they're all being paid pennies per hour in the isolated workshops. And so when you realize that this is still legal, suddenly, you know, for so many people, it clicks that it's not just our attitudes towards individual disabled people that can be problematic, but it's the fact that discrimination is literally still written into our systems. It is literally still a part of the systems that we exist in.

It's so important to remember that disabled people are still seen as, in so many cases, being unable or incapable, or simply unwelcome in certain parts of society. And we're the ones who are keeping that mindset afloat. We have the ability to change this. We have the ability to change these laws, to change these attitudes and these mindsets.

But right now, we are still, as a society, comfortable with letting segregation and letting inequality be the status quo. 

And so the problem when we're shutting disabled people out of the workplace, it's not that disabled people can't perform. It's that we're not providing the support that they need to do their jobs effectively. So that's the first problem. And then the second problem is that by not having disabled people in your workplaces, you're denying yourself, your company, your business, your organization, the insights, the wisdom, the adaptability of the disability community. You're denying yourself an entire population of people who are consumers and who are workers simply because of your attitudes towards them. So you're missing an entire group of people who could patronize your business, you're missing an entire group of people who could inform how you develop your product. You know, you're ignoring 1 billion people. 

Ashley Hamer: Now I know what you might be thinking. There are disabilities that do make you less able to do certain jobs. But a lot of the time employers make unfounded assumptions about a disabled person's ability to do a job. A 2019 paper in the Journal of Business and Psychology laid out 11 different concerns expressed by employers and reviewed the evidence for or against them.

You can find the paper linked in the show notes. It's definitely worth reading the whole thing. But the big one they address is that yeah, managers sometimes believe that people with disabilities can't do the basic functions of the job they've applied for, especially physical functions.

But this is often, again, an unfounded assumption. Like, a 2012 study of employees with spinal cord injuries found that many of these employees were performing jobs that went above and beyond what would have typically been expected of someone with that disability?

And some of this is just plain stereotyping. Many employers see disabled people as being less competent and skilled than non-disabled people, but studies comparing unemployed people with and without disabilities find no difference between them when it comes to markers of hireability. That is, things like their likelihood of having had a job for more than a year, whether they've had a managerial level position, or whether they're unemployed due to being fired.

Studies have also found almost no difference in productivity between disabled and non-disabled people. And when they did find a difference, it was disabled people who had a small edge.

Some other fun facts, the paper uncovered: in response to managers saying they can't find qualified disabled candidates, the authors point out that a ton of online job boards are not very accessible and that job postings are not that welcoming to disabled people. Fewer than half of Fortune 500 companies include disability in their diversity statements, for example. Okay, so what about the cost of providing accommodations to a person with disabilities?

Well, the authors cite a 2018 study that found that a majority of the employers they surveyed had to pay $0 for accommodations. I mean, flexible hours and remote working costs nothing, people. Those who did pay reported a one-time cost of less than $500, but also reported a $40 savings for every $1 they spent.

But there's also the fact that many accommodations help every employee, not just the disabled ones. And that phenomenon actually has a name. The curb cut effect.

Emily Ladau: I love talking about the curb cut effect because it's such a simple example of how something that we technically are modifying for disabled people actually works for everybody.

So if you have a curb, sure you may be able to step up it, but what about people who have strollers? What about people who have rolling luggage? People on roller skates, skateboards, bicycle, you name it. Suddenly. If you have a curb cut, everybody can get up on the curb. It hasn't made anything harder for anybody, but it's made the curb accessible to everybody.

And so why not apply that to everything? Why not make everything accessible because then it will work for so many more people. And it's not going to shut people out. I love the concept of the curb cut effect. I tried to apply it to every area of my life and lately, because of what's been going on with the pandemic, I've been talking about the need to create more virtual curb cuts, which is essentially allowing people to continue to participate virtually whether it's telemedicine, whether it's taking classes from home, working from home. Going to cultural events from home.

You're creating virtual curb cuts because now everybody can participate in a way that's safe for them without actually being excluded from the event.

So more curb cuts for everybody. 

Ashley Hamer: And this isn't limited to office spaces and public events. 

Emily Ladau: For me, it's about recognizing that when you are planning an outing, when you are working on a work project, when you are doing anything that involves a group of people, how can you make it most accessible to everyone who's part of that activity? And so, the challenge is sometimes that people might have conflicting accessibility needs. That's always an interesting one. Somebody might need the room, for example, to be incredibly bright in order to be able to see and navigate. And somebody with a sensory disability might need the room to be incredibly dark so that they can better, you know, exist in that environment without feeling overstimulated.

And so virtual curb cuts to me sometimes look like solving a little bit of a puzzle or riddle and finding a way to make sure that we're making an environment that's as inclusive and as all-encompassing to everyone as we possibly can. And so if I'm getting together with a group of friends, my first question is usually, what can I do to make this most accessible to you? How can we work together so that we can all have a really good time where we're going? Is it that you need accessible seating? Do we need to account for accessible transportation? So the virtual curb cut metaphor is really just a way of saying, let's make things accessible to people.

Ashley Hamer: I think it strikes me that maybe to some non-disabled people, asking questions like that might be othering or like uncomfortable. You know what I mean? Is there a right way to ask those questions? 

Emily Ladau: Yeah. So I talk about this a little bit in the etiquette chapter in my book, because there are certainly questions that you don't want to just blurt out and ask people like, please don't just come up to me and ask me if I can walk or if I can have sex or what happened to me.

Like that's weird, but it's totally okay, in many contexts, to say, Hey, how can I make something more accessible to you? Hey, do you need any accommodations to make this work for you? Or how can I help you? Those are really simple and straightforward questions. And sometimes, we forget that just asking the question is the most important step.

So we either assume that we know what's best, or we assume that someone doesn't need anything and both of those assumptions can be kind of harmful. So it's definitely a delicate dance. And I understand why it feels taboo to ask questions, especially if you don't really know someone, but sometimes asking a question is the appropriate thing if it's going to make something more accessible to people. 

If you think about it, every issue is a disability issue because disability is the only identity that cuts across any and all other identities. The disability community is all-encompassing. And so if you're talking about employment, yes. That's one issue area, but what about access to education? What about access to healthcare? What about access to transportation? What about voting rights? You know, suddenly, you start listing all these issues and you realize these are disability issues. Because people may have trouble navigating a transportation system, or they may not have access to transportation that works for them because they can't get on the train because of their mobility device.

That's not the person's fault. That's the fault of the system, right? Access to healthcare. Lack of insurance. Being kept in poverty, not being able to access the equipment and the care that you need to take care of yourself as a disabled person. That's an issue. When we're talking about voting rights, something as simple as everything going on right now with mail-in ballots and access to alternative methods of voting, you're shutting out disabled people, you know. 

So, the deeper you dive into pretty much every issue area you'll realize it's also going to be a disability issue. 

Ashley Hamer: It, I don't know. This seems silly, but it reminds me of the, as seen on TV, um, objects, you know what I mean? Like the helpful objects, when people will make fun of them all over the place. And it's like, actually this thing that's making a non-disabled person's life easier and maybe seems like it's not useful, is actually like, it was originally created for people with disabilities. 

Emily Ladau: Gosh, that's not silly at all. There have been a couple of articles where, and I believe there was one by the disabled writer, s. e. smith in Vox, if I'm not mistaken talking about how there are a lot of items, just like the ones that we call the As Seen on TV items that people like to make fun of, and like to say that we are lazy for using them, but actually they're just making things easier for people. Non-disabled and disabled. Fruit slicers and fruit peelers and kitchen gadgets.

There's a channel that I like on YouTube. A guy named Barry Lewis and he does a lot of kitchen gadget testing. And at the beginning of all of those videos, he says that he wants his audience to remember that a lot of these gadgets, silly though they may seem, can actually help people with disabilities.

I'm that's a great reminder because we're so stuck in our attitudes of, you're lazy if you need help and you're lazy, if this doesn't work for you, but no, we're just adapting in a world that was not made for us. 

Ashley Hamer: Right. Yeah. I mean, w why do things have to be hard anyway? Like why is that a moral strength? 

Emily Ladau: I think it has so much to do with the value judgments that we place on people in a capitalist society. Like if you're not constantly being productive, if you're not putting in that elbow grease and, you know, sweat equity. Pick your buzzword. I mean, you're suddenly a worthless human being. And so disabled people definitely have that working against them.

Ashley Hamer: Yeah. And I feel like the elephant in the room for this is COVID. So many people after this pandemic is over, hopefully it ends, so many people are going to be left with disabilities after this. And it just, I don't know, it brings it so much more into focus. 

Emily Ladau: I'm glad you brought that up, not because I want that to be the reality, but because it is the reality. COVID has led to so many more people having disabilities. And my hope is that we have awakened at least somewhat to understanding that we can in fact, make the world more accessible. I mean, for so many disabled people, we were fighting for virtual options or hybrid options for a lot of things well before the pandemic. And then suddenly when the pandemic hit, everybody was forced to change over to a virtual world and disabled people were throwing their hands up and we were like, hello! You know you can do it now, so what's your excuse? And I think, as we move on to this next phase of COVID and hopefully someday to a post-pandemic world, the challenge is going to be not forgetting what we've learned during the pandemic.

Don't just make things accessible when it's convenient for everyone, make things accessible because at some point everyone will need it. And I think even though that sounds a little bit similar there's a crucial difference in mentality there. In one you're doing it because you have to, in the other you're doing it because it's just a way to make a better world for everybody. 

Ashley Hamer: And that brings us back to the idea that non-disabled people are only temporarily able-bodied. Anyone could become disabled at any time. With COVID out there, this is as much a reality as ever. 

Emily Ladau: And so when we say temporarily able-bodied what we're talking about is the fact that your existence may change. That can be from one day to the next, but it can also be because of something like a car accident, because of an injury that you sustained, because of something that happens internally in your body because of a medical condition.

And we look at these as being very tragic occurrences, but if we start to consider the fact that any of us can become disabled at any time, then maybe we'll start to think about, Hey, why don't we make the world a more accessible and inclusive place now, so that if my body changes tomorrow, the world is a better place for me too.

Ashley Hamer: Thanks for listening. Taboo Science is written and produced by me, Ashley Hamer. The theme was by Danny Lopaka of DLC Music. 

A million thank you's to Emily Ladau. You can find a link to pick up her book in the show notes. Again, it's called "Demystifying Disability: What to Know, What to Say, and How to Be an Ally." And as I told her, I devoured the thing. It's a surprisingly lighthearted approach to a subject that can be kind of heavy. And it feels really welcoming, like she's speaking directly to you. I highly recommend it. Emily also has her own podcast. It's called "The Accessible Stall," and it's all about issues within the disability community. There's a link to that in the show notes too. 

Also speaking of accessible, this episode has a transcript. Very exciting. I hope to make transcripts of all past episodes soon. It's definitely on my list, but for now you can find every word that was said on this episode, on the citations page. Again, that's in the show notes. 

Last thing before I let you go: Emily had a lot more to say about things like ableism and gene editing and those high-tech stair climbing wheelchairs you see headlines for every few years. We didn't have time for it all, so I'll be including that in the newsletter. You can subscribe to that at tabooscience dot show slash newsletter. 

That's all. Thanks for making it this far. The next episode will be in two weeks, so I'll catch you then.